BACKGROUND: swallowing changes occur from the earliest stages of Parkinson's disease (PD), even in cases asymptomatic for dysphagia. Little empirical evidence exists concerning the individual's own perception of changes, the impact these have on their life and coping strategies to deal with them. OBJECTIVE: to establish if and how changes in swallowing impact on the lives of people with PD. DESIGN: in-depth interviews with qualitative analysis of content. SETTING: community. SUBJECTS: a total of 23 men and 14 women and their carers. METHODS: participants were purposively sampled to give a mix of men, women, family circumstances, stage and duration of PD and severity of swallowing symptoms. Individuals were interviewed at home. Interviews were transcribed. Emergent themes were identified and fed back to participants for confirmation and clarification. RESULTS: two broad themes emerged: (i) effects on swallowing of underlying physical changes, with subthemes of oral-pharyngeal-laryngeal changes, manual changes, effects of fatigue and (ii) psychosocial impact, with subthemes of alterations to eating habits, feelings of stigma, need for social adjustment and carers' issues. Coping strategies could aid swallowing problems but often to the detriment of others in the family through altered demands on preparation and organisation. Presence of significant impact was not necessarily associated with abnormal range scores on objective swallowing assessments. CONCLUSIONS: the psychosocial consequences of the physical changes concerned people most. The importance of the early detection of changes for health and quality of life is underlined.
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